Patients with chronic kidney disease need to understand different treatment options if they are to make informed choices about which to accept. This article outlines the development of a booklet designed to improve information-giving to people with learning disabilities who have CKD.
Jenkins, J.P. et al (2008) Explaining renal treatment to people with learning disabilities. Nursing Times; 104: 44, 28–29.
Jean P. Jenkins, Dip Professional Practice, RN, is clinical nurse specialist, nephrology and transplant directorate, Cardiff and Vale NHS Trust; Ann R. Jones, MSc, BSc, RN, is clinical nurse specialist, Cardiff and Vale NHS Trust and associate lecturer, School of Nursing and Midwifery, Cardiff University; Christopher Griffiths, RMNH, CNMH, MBA, is consultant nurse, Abertawe Bro Morgannwg University NHS Trust.
As a clinical team, we recognised there was a lack of information to inform people with learning disabilities who have chronic kidney disease (CKD) about the many treatments and interventions available. In the past we had tended to focus on relatives and carers to give information and take decisions, undermining possible patient involvement.
We wanted to improve our communication with this patient group, recognising that we could enable them to participate more fully in decision-making.
When glomerular filtration rate falls to around 25–30ml/minute, patients and families begin to receive pre-dialysis education. It is vital that both understand the treatment options in order to make informed choices about therapy, which can include dialysis and/or transplantation or conservative management.
People with learning disabilities may have difficulties in understanding and using information. They need specific consideration when developing CKD education to ensure it is accessible and appropriate, and enables them to make decisions.
This issue has become an overarching principle in the NHS. Staff should not make assumptions about a person’s ability to give consent just because they have a learning disability. They should be empowered to participate actively in decision-making.
Healthcare staff have an ethical obligation to involve patients in a process of shared de-cision-making and to seek informed consent for treatments and procedures.
Those who are deemed competent to make an informed choice should be able to understand and consider information they are given. Where patients are not deemed competent to make decisions for themselves, a third party may become involved.
The Mental Capacity Act 2005 serves to protect people with learning disabilities, especially concerning informed consent.
Mental Capacity Act
The Mental Capacity Act gives people with learning disabilities the legal right to be involved in any decision-making that affects their lives. It also recognises they may require support to make decisions.
The act also includes provision to protect those who lack capacity, when the use of ‘best interests’ applies. It outlines how ‘best interests’ decisions should be made and sets out a duty to ‘do whatever is possible’ to permit and encourage people to take part in decision-making (DH, 2008). ‘Best interests’ requires the decision-maker to consider the best course of action for a person. It considers both their current and future interests, weighs them up and decides which course of action is, on balance, the best for them (Joyce, 2007).
The independent mental capacity advocate service provides statutory advocacy that is independent of the NHS (DH, 2007). It is important that healthcare teams know about this service. A person is assessed as lacking the ability to make a decision and in need of an independent mental capacity advocate if they cannot satisfy one or more specific criteria (DH, 2007). These are the ability to:
Understand information given to them about the decision;
Retain the information long enough to make a decision;
Use or weigh up the information as part of the decision-making process;
Communicate their decision (by any means such as talking, sign language or blinking).
We reviewed the education programme for patients with CKD. It was clear the patient case-mix was changing, with increasing numbers of groups, such as older patients, black and minority ethnic groups and those with learning disabilities, all of whom need different types and complexity of information.
We recognised it was difficult to deliver meaningful education to patients with learning disabilities as many were unable to read or comprehend existing written information. Redesigning our educational packages therefore became a team priority, with the initial aim of providing more useable information for those with learning disabilities.
A pictorial booklet was designed to improve information-giving on the anatomical and physiological aspects of CKD and its treatment options. The overall goal was to ensure that information was simple and clear and could be understood by those with learning disabilities.
Service user involvement
The booklet was initially designed by the pre-dialysis clinical nurse specialist and images were drawn by a graphic designer in the trust.
Involving clients was key to making it user-friendly. During the early stages, we sought and received input from an ‘accessible communication group’ in a neighbouring trust. This consisted of service users with learning disabilities and multidisciplinary team members who reviewed the pictures and symbols for ease of understanding. Group members recommended changes to the booklet and the use of symbols. It is important to select symbols that are already known and used by the people for whom the publication is written. With this in mind, some common symbols such as those for hospital and days of the week were adopted.
Service users’ views were also obtained to identify the best pictorial representation of symptoms. For example, they were shown a selection of pictures to represent a person feeling tired and asked to choose the one that best represented this to them. Often their choice was completely different from the expectation of the clinical nurse specialist who had designed the booklet, which shows why service user input is important. The group reviewed the revised booklet, and approved changes for the final version.
The booklet’s contents incorporate a pictorial guide which describes:
Functions of the kidneys;
Symptoms related to CKD;
Treatments available – haemodialysis, peritoneal dialysis, transplantation and conservative management;
Symptoms and treatment of renal anaemia.
The booklet has been piloted as one of a range of teaching resources used by the pre-dialysis team and has made it much easier to provide information to patients with learning disabilities. It can also be used with others with communication difficulties.
The team has gained satisfaction from being able to involve patients directly in education. So far, feedback from patients about the booklet’s usefulness has been informal and based only on the subjective view of the nurse providing the information.
Nevertheless, it was noted that patients particularly appreciated being included in the education process and they seemed to be able to gain some understanding of how CKD was already affecting the way they were feeling or may do in future. Our goal is to develop a questionnaire specifically designed for this group to enable them to give effective feedback about the booklet.
Empowering patients with learning disabilities with information may help to ensure that they fully collaborate in important treatment decisions at all stages and so improve their opportunities for better health. This project has gone some way towards enabling us to provide an inclusive pre-dialysis service to this group. Involving service users and the multidisciplinary team has greatly contributed to the project’s success, and the benefits gained from their assistance cannot be overstated.
Implications for practice
Barr, O. (2004) Nurses for people with learning disabilities within the UK: an overview and some challenges for the future. International Journal of Nursing in Intellectual and Developmental Disabilities; 1: 1, 5.
Department of Health (2008) Local Authority Circular – Mental Capacity Act.London: DH.
Department of Health (2007) Making Decisions: The Independent Mental Capacity Advocate (IMCA) Service.London: DH.
Disability Rights Commission (2006) Equal Treatment: Closing the Gap. A Formal Investigation into Physical Health Inequalities Experienced by People with Learning Disabilities and/or Mental Health Problems. London: DRC.
Joyce, T. (2007) Best Interests – Guidance on Determining the Best Interests of Adults who Lack the Capacity to Make a Decision (or Decisions) for Themselves [England and Wales]. Leicester: British Psychological Society.
Michael, J. (2008) HealthCare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities. London: Independent Inquiry into Access to Healthcare for People with Learning Disabilities.